5/21/2002
Subject: Ann update - stable
From: Brian Bulkowski
To: AVS Cancer list

Hello folks,

It's been a while since my last update, so this will be rather long! Again, please forward to anyone who might be interested.

In some fairly real sense, little has happened. We're still on the same treatment path (moderate dose radiation, low dosage Temodar), and Ann is showing no side effects. Some symptoms seems to be decreasing, but it's hard to say whether that's because of the effects of the anti-swelling medications she started a few weeks ago, or because all the treatments are starting to take hold.

Her double vision is sporadic now, instead of constant. If it happens, it tends to happen late in the day. Her temporary disorientation getting out of cars, which was severe two weeks ago, hasn't happened at all in the last few days. These are encouraging signs. Most people Ann's age have a positive response to the treatment. The doctors mentioned that it's time to start thinking about lowering the steroid dose, as people just can't tolerate as much as she's taking for long periods of time. Other than that, we just show up at the radiation appointment every morning, work through the day, and do the chemo dose at night.

The side effects we've all been concerned about - nausea, tiredness - haven't cropped up at all. Ann remains as up and chipper as I've ever seen her. Sure, there are the usual moments of worry, fear, and depression, but we get over them quickly. That would seem to be par for the course, given the seriousness of what we're dealing with. The radiation + chemo protocol - using "low dose" Temodar (1/2 of normal) instead of the more common, older chemo drugs - is far better tolerated than the old stuff, and the new anti-nausia drugs are great. One writeup I saw said that with that combination, nausea is just a thing of the past, which we're hoping for.

We've hooked up with a study at the UCSF Magnetic Resonance Center where they are doing the MRS (Magnetic Resonance Spectroscopy) procedure. It's not quite ready for prime time because it takes a while. Instead of the usual 20ish minutes in the MRI tube, and MRS is about 90 minutes. With all the prep time, that's closer to 2 hours! All with the MRI sound of banging. Ann said that when she did the MRS, she meditated with the image of a hammer pounding on the tumor. The MRS is like a standard MRI, but also attempts to analyze the spectra of the re-emitted energy (and old technique) and they've found a way to measure actual body respiration. That was a problem in the old stuff -- you'd see blood, but wouldn't know if it was actively involved, or just pooling. It has all the information of the old MRI, though, just a bit extra.

The MRS guys wanted to get a baseline before treatment, so Ann did this thing last week. I've bugged the doctors to just give us a feel for what they saw on that scan, and they said it was "about as they expected", so an expected growth pattern in the 10 days between the first MRI and the MRS, during which there had been only a day or two of treatment. That's not good news, not bad news, but instead rather neutral and expected.

We're going to have another scan next tuesday - a week from now. Our main radiation guy, Dr. Larson, is at a conference and on vacation, but he'll be back then. He wants to evaluate the possibility of lowering the field of radiation treatment to the main body of the tumor. With the equipment they have, they can shoot down to 1-4 *millimeter* precision, so a standard radiation course covers only the tumor. As Ann's has spread to most parts of the brain, we have to start with the whole brain. Whole-brain radiation can be damaging in the long term (problems cropping up in the 3-5 year range), and he understands we're fighting for long-term survival. It's a tough call, but he's my favorite doctor in this whole mess, and we'll work with him for the best balance of treatment.

Ann's been very good about her diet, which is healthier than it's ever been. After a lot of reading, everyone agrees on fat removal, high protein, and a good balance. We've started cooking all of our meals in, and running up to our health food store every day. Much couscous, corn on the cob, fish, kale, and soy. There are a few oils that are deemed good, such as flax seed oil and fish oils, but we don't find them at the local grocers. We're still on the fence about full macrobiotic, and are going to be talking to some oncological nutritionists for various opinions. The MD types have been a little cagey about this, saying things like "I can't say that nutrition has an effect", which is usually doctor speak for "it would be against the law for me to share my beliefs with you". It's an odd world.

The exercise regime is going well. Ann's spending over an hour at the gym every day. I can't manage that myself, between keeping up with the doctors, managing the appointments, doing research. We're not as worried about the number of calories burned anymore, of course, just keeping her general health and immune system functioning well.

And some big news -- we found a house! The time we spent looking was crushing us. We knew we needed the time to investigate all the treatments, and just weren't getting it. All the leads my mother found when she was out didn't pan out well, but finally we saw a place last thursday that fit the bill, and we signed a lease on saturday. That's how fast you have to move around here!

Our new address will be:
1065 Cragmont Ave
Berkeley, CA 94708
effective 6/1! Phone (415 609 6926) and email will remain the same.

It's a great little place with a good feeling. It's a 1920's bungalow style layout, 3 decent bedrooms, a good front living space, and a decent back yard. Not huge, no jacuzzi or hot tub, or bay views. The best part is the neighborhood. It's rather far up in the hills, but right on Euclid Ave, which means there's a bus right down to campus and the BART station, yet there's also a fabulous park around the corner with full views of the bay, and the berkeley rose garden's a short walk. It's got a decent yard which gets mid and late day sun, and I look forward to grilling and a certain amount of sitting around. The kitties will love it!

We meant to get pictures for y'all, but forgot to take the camera over -- twice! I'll send out a few pictures when we get that act together. It's not much to look at, really, just feels good inside. There's a new bathroom going in now, so we can't move in right away.

The general schedule for the move is June 1-ish. Some folks were over last weekend (Mike and Ann; Ruth, Todd, and Lily) and did a great job of boxing many things up. When we move the boxes depends on the exact nature of how the contractor finishes up, and whether we want to move stuff into the basement a bit early. The lease is written for June 1, though, and the contractors are doing a very fast job so far.

Yesterday, we had a great experience. Ann was recognized by her department (rhetoric at UC Berkeley) yesterday at their graduation ceremony, for the non-rhetoric work she's been doing in the community - the kid's camp, the mask project, the poetry awards she keeps winning. The commencement was both for Rhetoric and Film Studies, and the speakers were both lively and thoughtful. They gave her a great plaque, with a list of many projects she's done beyond the bounds of Berkeley. It was very touching, and Ann got a chance to mingle with some of her professors and friends that she hasn't seen for a while, as she's been buried in writing the dissertation.

I have pictures from that, but the video camera and/or computer is being ornery, and won't transfer them without a fight. I'll try to get them out soon.

This mail is a lesson to me that I have to send out updates more often! There's so much more to say. Ann's been working hard on meditation, like TM, and Carl and I are still working on more cutting edge medical stuff, like MT/Copper (Michigan, Miami), hyperthermia (german technique, done at UCSF), induced hyperthyroidism (done at Cincinatti). We're considering going to Hawaii for the weekend, but I'll send out another mail if that pans out.

This article, in particular, is a round-up of various cancer treatments.
http://www.virtualtrials.org/transbrem.cfm
And an information page about the copper work, with links to the research papers
http://www.infiltec.com/anticopper/

This week has been one of the first when it's just been the two of us at home. We've been dropping by friends' houses more often, seeing people. It's still great to get phone calls, thoughts, emails. Please keep us in your thoughts -- as you are in ours.

As a closing thought, let me give you a poem Ann wrote the other day. We're working to make sure Ann keeps working and accomplishing her usual range of fantastic feats, and this is part of that. It's a little raw, and part of a longer piece.

******

These people are all wrong

The ones who hurt me most by not believing

Even as they are trying to tuck me in cosily
like macaroni and cheese in the too old tupperware

I know what I'm doing

I don't need your pity

I am not leftovers on their way to mold

********

infinite love,
-brianb